When Disability becomes a Problem

Becoming a single parent was one of the biggest challenges of my life but to be disabled and somehow manage was something that no one could ever prepare me for.

Although I was living with this disability and mentally being aware of what “may” happen with its degenerative properties it didn’t occur to me that one day I wouldn’t be able to cope. If anything I thought “I will show my children that there are more to disabled people and disability doesn’t mean no ability”.

I have, however, been incredibly lucky. The boys have grown up whilst my disability has degenerated and every “change" has been a natural activity for them to experience.

Last year the boys reached the point where they were registered as Young Carers. They may only be with me 50% of the week but they have, at times, become the ability that I lack.

They know my disability, know my restrictions, know my abilities and know when to help.


The older I get and the further I degenerate is always in the back of my mind but I think part of me has taken for granted the fact that the boys are almost desensitised to the reality of what is happening.
Then I became a step-parent.

Hannah had spoken to the kids before I met them and briefed them on muscular dystrophy and explained my limitations. Yet, like many, seeing is believing. Naturally, the staring and watching was something that I expected and apart from a few instances, where they thought I was having a “seizure” when in truth I was sitting up in bed, they seemed to adapt to their disabled step-dad.

With social services being involved at the moment they recommended that the other two go on the young carers registers too.

This, however, brought up a new problem; something that I wasn’t expecting.

There was a suggestion that Midge doesn’t have much interaction with children her own age and gender.

We were confused; we are constantly trying to get her involved in activities and invite her friends over but she always turns it down.

When we sat down and spoke to her it eventually came out that the reason she doesn’t bring anyone over is due to my disability; her belief is that they would a) make fun of me and, b) make fun of her. Subsequently she avoids most social situations to prevent it.

It was quite a shock for me. She, up to that point, had taken everything in her stride and seemed to accept and adapt to the different aspect of my disability.

The boys have known nothing different. Over the years they have faced the scorning and mockery of people around them. They have shown pride in their father despite of the disability; seeing me as the real me rather than the perceived stereotype.

The sad truth is that they have seen the rough end of disabled discrimination. The other two haven’t.

Midge is in the “preteen” stage where some family life is “too boring” and school “drama” seems to be her main focus and the hormonal attitude is clearly fluctuating.

To be fair to her she has also just started Secondary School. This is a minefield of worry for anyone. The social “norms" are completely different to primary school and you find that everyone around you is battling hormones and there's always one child who is overloaded and is a bit of a bitch.

I knew there may be a possibility of the boys in the future having similar feelings and yet there was a part of me that dismissed it due to their general attitude now. In fact, William will often recount the bullying he had at school from peers over my disability and announces their stupidity.

I do understand it. I experienced it first-hand as a teen and it was incredibly painful. However, a part of me sees my disability as something I have to go through rather than anyone else.

To credit her, she will often be caught on a rant about what her own dad and other people’s dads are like and how I do ten times the amount with her than them. It made me feel that she appreciated the things I do despite the fact that I didn’t need to or couldn’t do them. Yet, the embarrassment is still there for her.

Ultimately, she is at that age where she is torn. She loves me, loves the things we do, is proud of everything I do but caught in a preteen hormonal situation with others around her.
We have tried to speak to her about it. Discuss our understanding and try to tell her that anyone who would do that to her aren’t really the type of friends you would want.
In response she is obviously carefully thinking about it. She voices that she is making “good friends" and although she isn’t broadcasting the fact that she has a disabled step-dad she is disclosing it with people she trusts.

So what do you do?

Well I have searched high and low and can’t find anything relevant to guide me or her through this so instead I write here to see if others have experienced it. What did you do? Or, is this one of those parenting moments where you blindly navigate through this job called parenting?


**Please Note**
Midge has read this post prior to it being published and gives me permission to post it.